Today is Monday, July 25th. I am going to be 30 this September and I suffer from I Don’t Know What It Is, But I Certainly Feel Like Crap Disease/Disorder/Syndrome.
I have had “vague,” nonspecific abdominal “troubles” for years, perhaps since I was 7 years old. I was returning from practice for my first Reconciliation (back when I was Catholic) and since at the time my father did not like to participate in anything church-related, and since my mother did not drive, we walked a bit down the street afterwards. My father would just come and pick us up like hitchhikers. (My family is very strange). After just a few feet I could go no further due to stabbing pain in my lower right quadrant (LRQ from here on out…you’re going to be seeing a lot of anatomy talk on this blog) that stopped me in my tracks. When my father finally picked us up, there was talk in the car about what I’d eventually come to believe was the worst word in the I had yet to encounter as a 7 year-old: APPENDICITIS. The pain just would not abate. I stayed up most of the night, a mixture of fear, anxiety over anyone or anything touching my “spot” and annoyance at the creepy Charles Bronson flick my mother put on. The mystery pain eventually went away but would pop up at random times, prompting me to drop anything I was doing and hope, pray and bargain with the lord not to do this to me. For appendicitis meant excruciating pain and the possibility of death if not treated promptly.
Fast forward to college. It’s my summer after sophomore year and I’m indecisive as to whether or not to go to a hospital. The same damn pains back again! This time the campus nurse, after hearing my symptoms responded to the effect of “Well, my son didn’t have classic symptoms and it turns out he had appendicitis”. One would think I would race myself to the nearest hospital with such a non-reassuring answer. However, I had to factor in the fact that I was insured by sub par student health insurance and on my bleak hourly wages, I was afraid of the piling up of untimely medical bills. So I begged my friend who I dormed with to accompany me on this loathsome journey, and yet I was literally standing in a parking lot completely baffled as to whether I should even go into the ER. We headed to a local pharmacy and the pharmacist suggested I try Pepto-Bismol. He also grimly noted that if I suspected appendicitis, I should not eat or drink ANYTHING, as it could induce a rupture. That likely made up my mind for me and I raced to the E.R., only to be forced to languish in the requisite gown for 3 hours before I was told I had possible gastritis. I have since visited the E.R. no less than 4 times since then, with pains that ravelled to my upper right quadrant (gallbladder? liver??!!) to stabbing pains at the left of my naval. After various pokes and prods, blood tests, urinalysis, pelvic exams and even a barium swallow x-ray of my abdomen, I was always told it was “probably something minor,” and to “follow up with my (insert specialist here)”.
Another issue I’ve had to deal with is “possible, but probable” endometriosis (details I will save for another post). The pain and symptoms could easily mimic various intestinal conditions, and wouldn’t you know it but it always felt like I was having appendicitis. I despise that word for all the trouble it’s caused, all the mocking by doctors (yes, mocking) and all the hours of research I’ve done because no one else would do it for me.
The tides turned when I started to get completely random joint pain in my wrists this past December, which meandered to my shoulders, then decided to migrate to my thighs, knees and feet the following week. It was no joy watching “The Fighter” on Christmas squirming in my seat from burning aches and almost flulike symptoms.
There was no evidence of carpal tunnel syndrome on my x-rays, though a strong possibility existed (I’m a legal assistant..I do type quite a bit. I’m also a secret student, who tends to take a lot of notes). Nothing showed up. My internist said if the pain was still present after a week he would refer me to a rheumatologist (yes, we’re talking the big time). Blood tests, which my original internist said showed nothing, suddenly came back positive for ANA, or anti-nuclear antibodies. This was a basic indicator that an autoimmune disease could be present in your system. Goody, now I was getting somewhere. He ordered another set of blood tests and prescribed me tramadol for the pain that ibuprofen and acetaminophen wouldn’t touch. This time the results came back positive for both ANA and ASCA (anti-Saccharomyces cereviciae antibodies). These particular antibodies show up when Irritable Bowel Disease, or IBD, is a possibility. They are even more specific for Crohn’s Disease. Seeing how my father suffered from ulcerative colitis, and also finding that arthritis is one of the many random symptoms of IBD, I thought I’d finally found diagnostic relief.
My rheumatologist then asked if I had any abdominal issues. Miraculously at that time, I said I hadn’t, though I explained my history of “vague” symptoms. He referred me to a gastroenterologist for further testing. He also prescribed Plaquenil (I have the generic version, hydroxychloroquine), which I take to this day and which has improved much, but not all, of my joint pain. For this drug I had to get visual testing done as there was the remote possibility it could affect my eyes. Oddly enough not long after that appointment in March, my eyes started getting very dry and my bowels started acting up again. I could not stomach alcohol, brocolli, peppers (or anything involved in a stir-fry really. Makes my wok and I sad), spicy foods and whole grains. I had already given up most dairy products and removed bread from my diet as per my high ASCA titer (since bread = yeast) and even had to give up nuts, which rules out so many candy bar options. Also, I’ve gone down from 120-something to a scary 111-112 pounds at times. Today I’m at a steady though measly 115 at 5’6. I’d kill to gain back at least 5 pounds. No one believes me when I say that I’m trying. Instead they ignorantly roll their eyes and say, “Lucky” as snidely as they can manage. I’ve even been accused of by a fellow coworker of being a size “negative zero”. Bet they think I’m bulimic, too. What it all boils down to is this: Most heart-healthy, normal body-friendly foods are my foes and I’m currently at my dream size (if I were 11 years old again).
My GI saw me and instantly suspected Crohn’s, which so much of my own research (and family history) points to. I was given another blood test and last week underwent a CT enderography of my upper and lower abdomen and pelvis. And here’s the kicker…wait for it…
…The CT scan showed no evidence of Crohn’s disease. Everything, as was with my thyroid tests, was “unremarkable”. Everything that I went for that is – small intestine, large, liver, kidneys, stomach. No evidence of stricturing, thickening or fistulas. No tell-tale fissures or bumps. Now for the fine print: the substitute doc (for mine was conveniently on vacation) did inform me of several “simple, subcentimeter cysts all over my ovaries and uterus”. How hilarious- my pelvic sonogram last year never showed that. It, as most tests I’ve had, showed up empty. And so I made an appointment with my gyno for the dreaded birth control because believe me I’m feeling it. My left ovary throbbed so much last night I hardly slept. It’s odd knowing exactly where your pain is coming from because it can become all too easy to focus on that. And especially since I’m no novice at anatomy lately, I often wonder if I can notice bodily changes down to the molecular level.
In an sick, twisted universe, which might as well be my own suitably sick and twisted abdominopelvic region, why the hell not intestinal endometriosis? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2417966/pdf/postmedj00126-0014.pdf
All this time I feel as if I’ve been opening up a Chinese Box…of suggestions.
So to wrap up my very first post, I am almost right back where I started because I still don’t have answers as to where my joint pain (migratory arthritis) or my freaky dry eyes (Keratoconjunctivitis sicca) originated. I don’t know what I should or shouldn’t eat. I don’t know if I’m taking the right supplements. I don’t think I can afford not to know. And yet I hear over and over to be thankful that I’m healthy and that it isn’t XYZ disease. Thankful? For years of directionless testing that does nothing but continue to empty my bank account and zap whatever free time I have left? For making me appear to be a malingerer, an abuser of the hospital system, a whiner and a possible drug-seeker? For not letting anyone get that just because you can’t see the evidence of my pain, that makes it ok to comment on how I’m obsessed with my health and even going so far as to claim that I want to be sick? No thank you. My body has become its own worst enemy. It’s got a mind of its own and I’m apparently losing the battle.
Oh it’s on, body. It’s on.
My Body Is Losing Its Mind 